What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

HD Workout Tips

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About Shana:

Shana Verstegen is the former president of the HDSA Wisconsin chapter (2007-2013) and has served as a Huntington’s Disease Society of America national spokesperson since 2002. She received her bachelor’s degree in kinesiology and exercise science at the University of Wisconsin in 2002, and went on to earn the Log Rolling World Champion title in 2006, 2007, 2008, and 2012, and the Boom Run World Championship in 2008 and 2009.

Verstegen currently travels the country as a trainer for the American Council on Exercise – San Diego, TRX Training San Francisco, and Supreme Health and Fitness based in Madison, Wisconsin. She has helped raise public awareness about HD by making numerous television appearances on programs including the Tonight Show with Jay Leno, the Wayne Brady Show, Girls Behaving Badly (Oxygen Network), and a special ESPN feature about Huntington’s disease. In print she has been featured in venues including Oxygen, Women’s Physique World, Muscle & Fitness, Wisconsin Woman, and Newsweek magazine. While she says she has many things to be proud of, her work with HDSA in honor of her mother will always top that list. Her mother, Debby Martin, died from complications of Huntington’s disease in March 2013. Verstegen says that watching her mother lose her ability to move independently inspired her to live every day to the fullest with a focus on movement—from being the first female pole vaulter at the University of Wisconsin to winning a half dozen lumberjack titles. Verstegen is passionate about raising awareness toward finding a cure for Huntington’s disease, and fundraising to make that research and cure possible.